Most people caring for a family member with special needs eventually assemble a financial checklist of sorts.
They put together a team of health, legal, and financial experts who understand their relative’s condition. Then comes the estate plan and making sure they understand eligibility rules for any state or federal benefits.
Checking these items off, however, often proves to be the easier part of special needs planning. The harder part springs from two challenges that are ultimately rooted in emotion and behavior. It’s the psychological side, after all, that often plays a big role in just about every major financial decision.
The first is the question of where a special needs child or sibling should live. The second is not letting the stress of managing the affairs of a special needs family member contribute to the end of a marriage or other long-term romantic partnership.
When Alice Walther’s son was small and experiencing developmental delays, she and her husband took him to a major children’s hospital in the St. Louis area. A top doctor there told them that he was severely retarded. ‘‘He said to put him in a home, that it will ruin your family,’’ she recalled.
Her son Sean is now 43 and he never left his family’s home. He works part time at a library and pursues his passion for golf in his spare time.
“He’s gotten so used to his own room and his own bathroom that he wouldn’t fit into a group home, quite honestly,’’ Walther said.
Mary Anne Ehlert, a financial planner in Lincolnshire, Ill., has heard this before. Her own late sister, who had cerebral palsy, lived with her parents as an adult before her parents decided to have her move out.
‘‘You want to keep them totally in a bubble,’’ she said. ‘‘But it’s not in their best interest, and it’s not what they want. The problem is, if the parents die, then what?’’
Walther’s other son Michael, a financial planner himself, has thought through every angle of his younger brother’s situation. He sees things as Ehlert does and thinks his brother should move sooner rather than later.
‘‘Change is not something he does well with,’’ he said. ‘‘If we were to introduce it at the same time as the loss of a parent, that’s going to be an awful lot to swallow.’’
Their parents have a plan. ‘‘The minute one of us goes, the two who are left will move into assisted living,’’ Alice Walther said. They’re building a financial war chest for that moment.
Once Sean’s other parent dies or is close to death, Mike Walther plans to move his brother to the Chicago area where he lives.
The elder Walthers will celebrate their 49th wedding anniversary next month, but not every couple is so lucky. Families I’ve spoken to in the last two weeks have repeated a statistic that about 75 percent of parents with a special needs child end up getting divorced or splitting up.
There does not seem to be any data backing this up, but it’s clear why people may fear the financial consequences of a divorce in a family that is caring for a child or live-in relative with special needs.